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PhD student research lupus....b/c I have it too.

Hello Everyone!

I'm new and still learning my way around. I am a 31 y/o from Northern California and a final year PhD student studying Clinical Health Psychology. I'm a former board member of the LFNC- Lupus Foundation of Nor Cal. and working to promote lupus research. I've had SLE for over 15 years and wrote my Masters Thesis on the correlation between lupus and depression. Now I'm working on validating a tool to measure lupus, b/c if this can be done easily, research in this field will increase significantly. Not sure if I can post the link here.... Hmmm....

Additionally, the LFNC is promoting my study in their newsletter and the Lupus Foundation of America has included on their website. What other sites do you like to visit for info and support? Any help will be greatly appreciated. Wishing you all the best of health, today and always.

Hi Princess! *giggles* sorry, I had to - it sounds sarcastic but it's the truth! Sorry, anyways, Hi Sarah!
I'm glad to hear that people are still trying to promote Lupus awareness - ESPECIALLY those in the medical field. It's wonderful to have you here, so a big HI and Welcome to WHL!

I must say, since I'm not yet diagnosed with Lupus (just been diagnosed with a bland "you have an autoimmune disease", I tend to go to sites with stories of people who deal with many illnesses. My favorites are:www.butyoudontlooksick.com - which is a site for people with chronic, or "invisible" illnesses, which I Lurve. The site. Not the illnesses.

The other is http://www.thefightlikeagirlclub.com/ - which has many compilations and stories of women dealing with illnesses. Men are welcome too, but as you can see, it's marketed towards women.

Umm..yeah. I know a lot of people subscribe to the Lupus magazine/newsletter, as i've heard them talking about it, but I myself do not.

Thank you!

Thank you so much! Really appreciate the warm welcome and all the help. It took 7 years for the doctors to finalize my lupus diagnosis, good luck and wishes for good health. Don't worry about giggling at my screen name. Sarah means "Princess," not that I think I am one! Lol! :-D Sarah is such a common name, hard to come up with a screen name with it. Thanks again!

Originally Posted by Elo

Hi Princess! *giggles* sorry, I had to - it sounds sarcastic but it's the truth! Sorry, anyways, Hi Sarah!
I'm glad to hear that people are still trying to promote Lupus awareness - ESPECIALLY those in the medical field. It's wonderful to have you here, so a big HI and Welcome to WHL!

I must say, since I'm not yet diagnosed with Lupus (just been diagnosed with a bland "you have an autoimmune disease", I tend to go to sites with stories of people who deal with many illnesses. My favorites are:www.butyoudontlooksick.com - which is a site for people with chronic, or "invisible" illnesses, which I Lurve. The site. Not the illnesses.

The other is http://www.thefightlikeagirlclub.com/ - which has many compilations and stories of women dealing with illnesses. Men are welcome too, but as you can see, it's marketed towards women.

Umm..yeah. I know a lot of people subscribe to the Lupus magazine/newsletter, as i've heard them talking about it, but I myself do not.

Had no idea there was a short supply of lupus groups in Australia (I have family in Melbourne & Sydney--lovely country). Hope to validate my study internationally once I validate it in the states. Wishing you the best of health. Thanks!

Hi there Sarah,
I'm glad that you've joined us and that you are adding to the medical community's knowledge about Lupus.
Since I have several overlapping AI diseases, I find the Sjogren's Foundation site http://www.sjogrens.org/ and their support group at Sjogren's World http://www.sjogrensworld.org/index.html to be very helpful.
I'm not sure if this will help with your thesis, since you are concentrating on Lupus, but it might give you some interesting comparisons.
Best of luck with your research.
Hugs,
Marla

What a coincidence! I've been interested in the link between depression and lupus for a while, and am really interested in your research. Way before I realized I might have lupus, I did a rotation in a lupus lab as part of an MD-PhD. I wound up in a neuroscience lab for my thesis, with the hopes of collaborating with the lupus lab to research depression and lupus. I got a little sidetracked unfortunately, then knocked off my feet by retroperitoneal fibrosis with some kind of underlying autoimmune condition, probably lupus. Life is so strange sometimes.

The sites I use for information are LFA, this site, and pubmed. If I find others helpful, I'll send them your way. Let me know when something is published - I would love to read it. In your post, you mentioned a link. Would you be willing to PM it to me? Best of luck with your research!